The cost is $5 a person.
The event benefits the Global Foundation for Peroxisomal Disorders, a non-profit organization dedicated to helping children and families impacted by peroxisomal biogenesis disorders (PBD). Our son, Ethan Jeffrey Marshall, was diagnosed with PBD-Zellweger Spectrum on August 20, 2010 when he was just 28 days old.
Peroxisomal Biogenesis Disorder (PBD) refers to disorders in the Zellweger Spectrum, which include: Infantile Refsum Disease (IRD), Neonatal Adrenoleukodystrophy (NALD), and Zellweger Syndrome. PBDs are rare, genetic, metabolic, terminal conditions affecting all major systems of the body. Children with PBDs commonly experience sensorineural hearing loss, vision loss, hypotonia (low muscle tone), seizures, developmental delays, liver and kidney issues, problems with bone formation, feeding issues, and adrenal insufficiency
The funds raised will go to help families attend the annual GFPD Conference. This conference is the only conference in the country dedicated solely to families with PBD. You can learn more about PBDs and the Global Foundation for Peroxisomal Disorders at www.thegfpd.org.